This journey

Anonymousjpl123 · March 30

It’s been 3.5 years since my dad passed and I became my mom’s caretaker and her dementia took a fast slide. She moved out of state to be close to me 2 years ago. Many of you have been right there with me on this journey.

Staging: she was probably stage 3-4 before dad passed, 5 when she moved here. Now she’s in stage 6 in a good memory care.

She’s not depressed, they even go out for lunches, eat outside in nice weather (secure outdoor space), have activities, caring staff, etc. She sometimes says she wishes she could live at home - but who wouldn’t?

Last night for some reason thought I could take her home overnight. I wanted her to not feel alone. We’ve done it a few times and it was fine. Long story short she got the deadbolt unlocked and I heard the door but only after she had gotten out. Without pants on. In the middle of the night. Thank god she is fine and the cat (who got out too). Jesus. Everyone’s fine thank god. No more overnights obviously.

She hardly ever makes sense anymore. She still knows who I am but gets confused by photos. There are still thoughts there sometimes but less and less. I just wish there was something to do.

The irony is we never close at ALL - had a very troubled relationship - and somehow, loss is still hitting hard. Not even sure why. Others muddling through tell me how you are. Just needing consolation. So glad to know I’m not alone.

SusanB-dil · March 31

You are definitely not alone!

mom and I were never close, and yet there is sadness in seeing her in such a state and situation. 'this' just isn't her. Not at all. I see her as she was - a wife, mother, sister, and a nurse with a masters degree, and all of that is completely gone. That is sad.

jen ht · April 2

I am also muddling through as you've said. Good way to express it. It is a whole lot.

You are not alone. And this is very sad. As SusanB-dil has said.

I care and I am right next to you… just maybe in the next room.

Warmly,

jht 💜

Anonymousjpl123 · April 4

@jen ht and @SusanB-dil you are two people who have DEFINITELY been on this journey with me! I definitely feel we’re all kind of close in the same room. Thanks for being there.

psg712 · April 5

Late to the party here but I'm right with you. So glad your mom is safe.

I stopped in to see my mom in her MC this morning. Normally she's a little more clear in the mornings but today she wasn't. Sat on the toilet for 20 minutes after she was done using it because she didn't know what to do next. Looked at a picture of her only grandchild, whom she sees often, and just shook her head in confusion. And so on. It's hard to know what she understands because she speaks so little now.

I don't want our relationship to be just a series of tasks like bringing in supplies for her, trimming her nails, filing her tax return...but some days that's how it is. And no matter what your relationship was like in the past, it is so different now. It is sad. God help us all to stay the course for our loved ones.

Anonymousjpl123 · April 5

@psg712 100% true. Those moments - looking at her only grandchild and shaking head - are exactly what give me such pangs. I hate seeing the disease progress no matter what we do to keep them safe and loved and cared for. I hate dreading visits, not because I’m upset seeing her (sometimes it’s that but not always) but because I have to face it.

Your post helped a lot actually. Maybe those mundane tasks - visits, sitting with them, taking care of their finances - maybe that’s what we have. My mom still speaks but it’s less and less and hardly ever makes sense. I appreciate you “getting it” so well. We have definitely been on this journey together.

SusanB-dil · April 5

((Hugs))

Marie2019 · April 8

https://alzconnected.org/discussion/comment/240159#Comment_240159

is it normal to find it really hard to visit or see them change? I am feeling that that im burned out especially that my father has been changing since 7 years and now he is so different. My mom is taking care of him but im in pure denial phase and not able to accept the new change.

sandwichone123 · April 9

It can be really hard for me to visit my LO. Not only the changes in him, but also the setting and the other residents who come by and insistently ask indecipherable things. I have to bribe myself to go sometimes. My LO still values my presence, so I go, but I get a treat or lunch out as a reward.

Anonymousjpl123 · April 12

@Marie2019 absolutely normal. I’m only4 years in as primary caretaker (about 6 since my mom had memory issues) and each stage of progression has been really really hard. This disease is awful, no matter what. It’s awful to see the changes - some of which we don’t notice until we do. I’m so glad you found this site, it helps me a lot to feel less alone with it all. Hope it will help you too.

@sandwichone123 I am right there with you. Literally bribing myself to go today. You are another one I feel I’ve been walking side by side with. Thank you. I’m going to bribe myself with a long walk with my dog and bath before going and then I’ll bring us Starbucks. We’ll just keep going.

Anonymousjpl123 · April 12

https://alzconnected.org/discussion/comment/240442#Comment_240442

Also so true about seeing others in the same state. Plus the past few visits my mom has been irritated and unkind to me. The only thing I can do is have strong boundaries. I’m caregiving, not parenting, and I can’t fix it. I can just try to bring some comfort and maybe a snack. I have to believe just being there is helping, until it isn’t, at which point I leave. 💙

Quilting brings calm · April 12

As the years went on. I found it increasingly difficult to visit my mom and step-dad. Eventually the women who had dominated the puzzle table left and mom finally felt comfortable sitting there working a puzzle. I tried to visit her at the puzzle table. I could sit next to her, take out the pieces she had put in wrong, and we didn’t have to try to converse.

Anonymousjpl123 · April 19

Yes @Quilting brings calm i hope that happens soon. At this point I don’t know what I’ll get each visit. Sometimes it’s easy and fine, other times she’s pretty abusive and difficult. What is helping me is remembering I am separate from her and doing this as a family caregiver, not to cure her. It helps me find ways to stay centered.

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